Beneath is what I replied to the Guardian article today about Chronic Fatigue. I didn’t actually read all of the article, because it was making me incensed after just a couple of paragraphs: same old. I’ve said it before and it’s worth repeating, but never again; I just can’t do it any more.
Excuse the bad language in the title and at the end; I didn’t put that in the comment, but it’s also worth repeating (by the way, go over to Vox Political as there was an article concerning it there also; minus the swearing):
Believe me. When I was denied physical treatment 3 years ago, because a psychologist previously insisted that his research SUPERSEDED ALL other research on the disease, even sending me psychology appointments when I had dislocated knee cartilages (weak muscles have this effect on all joints), I explained to him that his research was skewed, because people like me were much too ill to engage in his ‘2 day week’ programme with mornings spent in the gym and afternoons in lectures about pain [denial] – completely laughable to anyone who genuinely suffers with this severe neurological condition.
I explained that I’d be back at work earning a good income as a community teacher if I could achieve that! I suggested that I’d last no more than a few minutes, then I’d have to go home. Since then I’m blocked from access to any orthopedic surgeon; I get psychology appointments instead. THAT is the sort of discrimination I and others face.
I explained to that psychologist a few years back however (who COMPLETELY controlled access to the Rheumatology department), that there are proven peer-reviewed studies that reveal the dangers of forcing exercise on people with this illness. Many are existing in heart failure; that’s why they feel a little better if they lie down and raise their feet: after all, the heart is a muscle too.
Low and behold, what happens to me this year? Yes, you guessed it, some kind of heart disease; something these sufferers commonly die of each year. Ignoring such evidence puts peoples’ lives at risk. My G.P. has solely had to treat me because not even the cardiac department believed me; I could have died, and could still die. You wouldn’t let your dog go through what I suffer with my heart and the bowel. My treatment was so bad – along with so many others – that I was asked if my experience could form part of a submission to N.I.C.E. a few years back.
Despite coming from a generation that was taught to highly respect their doctors, and never having raised my voice or said anything disparaging to them (yet they think they can shout at you!), the systemic prejudices surrounding this illness result in causing much suffering. I’ve never even ever had any diagnosis! ‘Chronic Fatigue’ does not encompass all that is concerned with this illness, rather fatigue is something people can recover from, but ‘fatigue’ is NOT: bowel spasms, spending 3 days living on the toilet because you can’t ‘go’; muscle spasms all over the body that leave you unable to move and damage muscles; extreme muscle pain weakness; myoclonic jerking in the legs that make you fall, the hands that make it hard to eat or hold a drink, the jaw that makes you bite your tongue and mouth cavity; severe cognitive function, leaving you unable to understand or be understood; general bowel and stomach problems because the digestion process slows down completely; inability to sleep due to pain and complete discomfort; inability to walk far at all, and if you try a little, you can end up house bound for months; feeling of having the worst flu you’ve had in your life; cartilage problems all over the body; heart and organ failure = chronic fatigue then eh?
I don’t know why I bother replying; I won’t do it again; no one will be bothered with it anyway, and the trolls will be in force, with their so-called expertise, like they obviously know everything about it. It’s clear that after all of this time, the opinions of the psychiatrists and psychologists – who are making a ‘killing’ out of this genuinely physical illness by the way with their quackery – control the whole situation.
Over 6 years ago, there were 5000 or more studies that fly in the fact of their voodoo ‘GET’ therapy. I don’t know why scientists bother researching it any more, because we just keep reading this sort of tosh, year in and out. Meanwhile, hundreds of thousands of lives are ruined; many dead.
And no, by the way, I’m not depressed, I’m bloody angry. I wasn’t depressed in the beginning, but I did have a nervous breakdown in the 90s, um, because I was suffering what is called as ‘the worst pain known to man’, an unbearable pain, and because I was crying due to it, they assumed it was depression, so I was left UNTREATED with a pain that people have committed suicide to escape from. I had to pay private for that diagnosis, then hospital had to act. 20 years later, a so called pain specialist tells me that I don’t suffer from it (despite being treated by the hospital), that my degree, my condition, is a fantasy; the spasms just based around panic attacks.
Ah. I’ll just shut up now. This is what we’ve had to face. This is why there is so much anger in the community. But well done some G.P.s, and the odd neurologists, that have sought to genuinely treat what they can. Despite what I face, I wouldn’t be alive now, unless they had gone against what mental health ‘specialists’ wanted to push on seriously ill people. Thank you so much: I wish there were more of you!
Fecking Chronic Fatigue? My arse.